New Doctor...learned some things...

dhs1963
dhs1963 Member Posts: 513

It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer.

For refersher, in January, I was kicked out of the Familial Kidney Cancer study at NIH -- they are reducing thier numbers, and anyone without active cancer (e.g., NED) is being "discharged".  They referred me to a local Dr., but I could not find anyone who was a patient of that Dr.  From here, and from smartpaients, multiple people recommended one Dr:  Dr. Hammers at Hopkins.

Thursday morning, I had a consultation.  He spent time with me, he looked over my records, and he answered my questions in language I could understand (I am a geophysicist). 

And he will be following me.

 

I learned how sarcomitoid differentiation makes the cancer more aggressive:  basically, the cells do bond as tightly, and the spindly morphology lets them escape...like a fiborous mineral compared with a lattice mineral structure.  (it works for me, don't judge).

He also explained how the cancer cells progress:  they die off in time, but not on an equal amount.  However, a half life might be a good analolgy -- and that would explain why some people (few) get mets after many many years.

And, he explained how I am lucky.  He said that, in some people, the mets come in waves -- surges like the first met is quickly followed by many of others.  For these, surgery is not optimal.   In others (which includes me), you will get individual mets....with those, the optimal treatment is to cut them out.  If my disease stays that way, they can manage it with periodic metastectamies. 

And I should expect future mets.  There is a very low likelyhood that nothing will reappear, but as long as it is one at a time, I should have a decent outcome.  So, 5yr survival rate might be high (> 50%), but disease free is low (~20%).

 

This all makes sense to me, and is consistent with what I have read.  I think I like this Doctor.

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Sounds like a very thorough

    Sounds like a very thorough doctor. He had some very interesting information. Glad you like him!

    Can you tell me what your stage and grade was at time of nephrectomy?

    Jojo

  • dhs1963
    dhs1963 Member Posts: 513
    Jojo61 said:

    Sounds like a very thorough

    Sounds like a very thorough doctor. He had some very interesting information. Glad you like him!

    Can you tell me what your stage and grade was at time of nephrectomy?

    Jojo

    Stage is difficult

    I was called stage1 grade4 w/ sarcomitoid features, but in reality, I probably had the lung met, but it was not seen on x-ray (it would have been seen on CT scan then, probably).

     

    The primary tumor was pT1b

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Hello!
    Just wanted to offer

    Hello!

    Just wanted to offer MY support with understanding.

    It is always good to be partner with a good doc. You seem to be ready for this journey/fight. Just wanted to let you know i am on your side! I appreciate your analogies.

    Warmly, Jan

  • dhs1963
    dhs1963 Member Posts: 513
    Jan4you said:

    Hello!
    Just wanted to offer

    Hello!

    Just wanted to offer MY support with understanding.

    It is always good to be partner with a good doc. You seem to be ready for this journey/fight. Just wanted to let you know i am on your side! I appreciate your analogies.

    Warmly, Jan

    I have been in this fight for almost two years now...

    My cancer was found incidently on an abdominal ct scan on may 1, 2012.

  • twinthings
    twinthings Member Posts: 409
    Making sense of it all

    Hi dhs,

    It's not easy making sense of the workings of cancer, so to have a doctor explain it in terms you understand is HUGE!  So happy you have found that in your new doctor. 

    I am sorry to hear about the mets.  Having confidence in your medical team will hopefully lower your stress and anxiety, if only a little, allowing you to stay focused on your treatment(s) and coming through them better and stronger than before. 

    Keep up that great attitude you have and you, my friend, will do just fine. 

    Hope you'll keep us posted. 

    Sindy

  • dhs1963
    dhs1963 Member Posts: 513

    Making sense of it all

    Hi dhs,

    It's not easy making sense of the workings of cancer, so to have a doctor explain it in terms you understand is HUGE!  So happy you have found that in your new doctor. 

    I am sorry to hear about the mets.  Having confidence in your medical team will hopefully lower your stress and anxiety, if only a little, allowing you to stay focused on your treatment(s) and coming through them better and stronger than before. 

    Keep up that great attitude you have and you, my friend, will do just fine. 

    Hope you'll keep us posted. 

    Sindy

    Mets...

    As long as they occur one at a time, they are not scary.  Donna has had many removed.  For me, it is a met so far, with the likelyhood of more mets, but hopefully one at a time.  Surgery sucks, but it is better than Stutent, IL2, and of course death.

  • foxhd
    foxhd Member Posts: 3,181 Member
    dhs1963 said:

    Mets...

    As long as they occur one at a time, they are not scary.  Donna has had many removed.  For me, it is a met so far, with the likelyhood of more mets, but hopefully one at a time.  Surgery sucks, but it is better than Stutent, IL2, and of course death.

    managable

    Cancer that is monitored and managable is not a bad thing. It becomes chronic disease like diabetes. One can live to and die from a healthy old age. That is all many of us could ever ask for. Good for you. I like it.

  • one putt
    one putt Member Posts: 72
    Your New Doc

    Glad you found your experience with Dr. Hammers to be a positive  one. He's the only oncologist I ever saw. After our first meeting I never felt the need  to get a second opinion. The late Chris Battle (Kidney Cancer Chronicles) a contibutor to this forum, once compared getting advice from his former doctor at Duke and Dr. Hammers as the difference between driving a Chey and a BMW. I have never had a negative experience with him that others have complained about with some of the doctors they have consulted. Fox credits his doctor with saving his life. I feel the same way about Dr. Hammers.